To put perspective on what this data actually means, we’ve asked Sally Smith, a
parent of a child with cystic fibrosis, and Dan Longhurst, a 21-year-old student
with the condition, to share their stories and hopes for the future

Sally

As a parent
of a pre-teenager, I feel the latest Registry Report is very positive and it’s
great that CF adults and parents of children with CF agree to be a part of the
UK CF Registry. It gives the Cystic Fibrosis Trust valuable insight into
patients’ lives enabling their research into the disease and raising the
standard of care across all CF centres.

I was
pleased to see that there has been a decrease in pseudomonas across the age
groups – it is a word that parents dread hearing at their clinic appointments.
My daughter took part in a research trial in 2012/13 which looked at taking
preventive measures to halt the growth of pseudomonas in the early stages of a
chronic cold. As isolating as CF is, for both children and parents, the new protocols
instigated across clinics with regards to cross-infection and early treatment have
obviously helped.

As a mum,
your natural instinct is to ‘wrap them up in cotton wool’ when you first
receive the diagnosis but it’s not really an option. And as I enter into those
teenage ‘non-compliant years’, I find the news that 70.9% of people over 16 are
in employment or further education encouraging – I just need to find more
interesting and fun ways for her to enjoy physical activity.

Dan

I'm
Dan, a 21-year-old university student from Essex studying Animal Conservation
& Biodiversity, living my life to the fullest with my old pal cystic fibrosis.

I was diagnosed with CF when I was just a month old, and had to battle the
highs and lows of the condition all my life (obviously). I’ve never let it stop
me accomplishing anything I’ve wanted to do in life.

The
first of the two distinct parts of my life that I found the hardest was
when I was at secondary school, when I realised I was not like everyone else. Because
I didn't know any different than having CF when I was younger, I was oblivious
to the difference between me and my friends, but growing up and releasing I was
"different" was hard.

The second was when I went to college: becoming more independent with my
treatments and balancing my social life was a struggle.

The hardest part of having CF I feel is not the treatments or the
inconveniences of being ill. I found, when I was younger, it was being made to
feel different from everyone else, constantly explaining to new people what CF
was and why I do certain things (such as taking Creon when I eat), and not
having/knowing anyone that was going through what I was (due to
cross-infection).

My Mum (Tina), Dad (Martin) and family have always have been there to support
me when I have been unwell. The biggest turn around in my health and lifestyle
when coming to terms with having CF was meeting my girlfriend, Rosie, who has
convinced me that I am no different to any other person and without the
condition “you would not be Dan”. Now my outlook is completely different on
life and I just simply “get on with it”.

These two perspectives show how the hopes
of parents like Sally become the reality for people like Dan. Share your story too and help us show the progress made in beating cystic fibrosis for good.